I have 4 kids, I am currently working on Social Security Disabilty (finally at the court hearing level). I have been married for 14 1/2 years. My family has a plethora of genetic disorders. I have Arnold Chiari Malformation type I, Ehlers-Danlos Syndrome, Tethered Cord Syndrome, in 2001 I had a small stroke that I have fully recovered from, and now have a 1.8cm aneurysm on my right kidney. I've had surgery to de-tether my spinal cord, a decompression to make room in the back of my head to improve my nearly non-existent spinal fluid flow. After the decompression, my graft leaked and I formed a pocket of spinal fluid in the back of my head known as a pseudomeningocele. I had surgery to repair that and during the surgery I contracted a staph infection. The infection went unnoticed for a month when it finally began to leak out through my previous stitch holes. It was deep and I underwent emergency surgery to remove as much of it as possible. I lost muscle, bone and tissue in the back of my head because the staph had killed the tissue. I was put on home care and given infusions of Vancomycin twice a day. I was ona 6 week treatment, and 4 and half weeks in I had a very bad reaction. I ended up in the hospital, in septic shock. I had toxic shock sydrome, was in the ICU for 5 days with extremely low blood pressure and a racing heart, fever of 105 to 106. My body turned bright red, and they pumped fluids into me very quickly to open my vessels. The fluid went to my skin and I put on over 100 pounds of fluid overnight. After I stabilized in ICU, I was moved to Critcal Care where they used lasik to take the fluid off. My skin peeled all over my body several times. I am left with remnants of the red that will never go away, and the reaction changed my body at a cellular level so that I no longer know what I am allergic to. I am now having problems holding my head up because of the pain. My doctor said "It's like trying to hold up a 12 pound bowling ball on a stick." Nice, huh? Because I have EDS, I have bad connective tissue and poor wound healing and my scar on the back of my head is enormous and I have a lot of scar tissue. My doctor knows that I need stability, but because of the previous infection I am very high risk. They cannot go in posteriorly because of the tissue deficiency and the previous infection. My C1 and C2 vertebrae have begun to shift when I move my head, and they believe a fusion of the two would provide more stability. They have to enter anteriorly, just under my jaw on the left side. Yesterday (8-20-09) I noticed that my lower lip on the right side was numb. It is not getting better. I ran across a post on this site by a woman that has a similar situation to mine. I believe my C1/C2 problem may be infringing on a nerve now.
My oldest son has McArdle's Disease. If you'd like to know what that is, please feel free to visit and search it. It's a metabolic form of muscular dystrophy. It's extremely rare.
My older daughter has a reading disability, and she has inherited Ehlers-Danlos Syndrome, thankfully not nearly as bad as mine. She is 13 and has had her tonsils/adnoids removed due to sleep apnea, and her appendix was removed last year. She is beginning to get headaches.
My younger son has Asperger's. He also has EDS, and he ended up with the worst case of any of my kids. He has indications of tethered cord. He also has headaches.
My youngest child, a daughter, has the same reading disability as her sister (and their father). She has tethered cord, EDS, and honestly all of my kids suffer from stress and anxiety.
My husband is healthy and luckily very strong in spirit. He hasn't given up on me, and he is a great caregiver. I believe that God has been with me through all of this, I'm not imposing my belief on anyone else, but I truly believe I would not be here if He hadn't intervened for me. I have been told by more than one doctor that there is no medical reason for me to have survived what I have so far. I plan to keep showing them how it is done!
I have a wicked sense of humor and my family does a lot of talking and laughing. I have sought counseling for all of us, as we all need to vent our frustrations. We are working on getting a place to call home, as we have been living with my parents (we thought it would be short term while I recovered from surgery, haha) and my husband lost his job due to the wonderful economy. He now has a stable job, but is making half the pay. We have been blessed by friends that have given us a mobile home, but the management of the park so far has rejected us, due to our debt (which is, of course, medical!) I am praying that my social security hearing will happen soon! If there is one thing this country has, it's a never ending supply of red tape!!
Whatever else you want to know, just ask. I have a tendency to be excruciatingly honest.